RE: unsure

[Guest guest]

Hi Prism,

I want to tell you that what you are feeling is totally natural and good.

You have the hesitation because you are doing all the research upfront and

that is all good. The problem with this condition is that no one can

measure your pain, or tell you it will kill you if you don’t have the

surgery. Therefore the decision to have surgery or not to TOTALLY a

decision that you the patient must make. The surgery takes a long time to

heal, will definitely change your life, will be scarey, and will hurt;

however you have all the support you could possibly ask for here with this

group. You are not alone, and at some point, only you will know when you

will be ready to make the decision.

I must say that I am totally scared of the surgery and have not had it yet.

But everyday I think about it, I read the comments, I mentally prepare

myself. Because this condition is still not well known, there are several

people out there that had surgery done by Drs that were learning or trying

to help people with the limited knowledge they had. It is because of these

people over the last 10 years that the Drs at TCI have been able to learn

and track what works and what dosent. Everyone is learning, we are learning

to cope and to better understand our own pain, the Drs are learning how to

help us cope and how to better understand our pain. However since this

condition differs so vastly from person to person the scale for measure is

really hard to judge. The answer that works for you may not be the best for

me in my condition, considering my level or pain tolerance, lifestyle,

health concerns – etc. All these things help make this silly condition

unique for each of us.

I must say – that when I first joined this group I was a solid NO on the

surgery, but after hearing and living with the pain I am learning more about

how I can control my pain, as well as learning more about my condition, and

my pain tolerance. The BEST solution is an educated decision. This group

is here to help you on your educational search. This surgery is here to

help you – it is not a solution, but a temporary band aid. There are plenty

of people that have had the surgery and then had symptoms return, however

each case is different. Some symptoms return do to another accident, some

return due to surgery not being done correctly, and some return due to other

complications. So all you can do is become educated on the Drs and the

techniques being used, the condition, the symptoms and what makes then

worse, and then follow your heart.

I hope this helps, I just wanted you to know – you are not alone. I wrote

this very same message about being unsure, about a year ago, mostly because

I was scared and overwhelmed. Take each day as it comes, you cant solve the

worlds problems in a day, and neither can you solve your pain in a day.

Pray on it, and learn all you can about the options available to you. Then

sit back and ask yourself what is holding you back. Only then will you find

the best answer for YOU.

God Bless!!

in OH

_____

From:

[mailto: ] On Behalf Of

prismed2001

Sent: Saturday, June 16, 2007 11:37 AM

To:

Subject: unsure

I want to write something, but I'm unsure where to start. It's good

to have found this group, but it's disturbing too. The threads that

I've read, they're situations I feel too close to home.

I want answers, theoretically but I don't think I'll like any of the

answers I may get. If my perceptions are accurate and Chiari, SM, TC

issues are the sources, if TCI says I should have surgery, I really

don't want that. And if they tell me these things aren't the source

of my problems and I'm left with the - it must be psychological- type

of conclusions I've had given to me for over 15? years, I would

despair at that as well. (((if's)))

I hear about so many ppl after decompression having symptoms return.

And I've been in therapy for years and years.

What's the point?

I'm guessing I'm not alone in my feelings.

My recent flare-up of symptoms has me discouraged. It almost seems as

if every part of my anatomy is affected.

I hadn't fallen in several weeks and fell badly recently, bloodied my

hand and jammed a couple of fingers. Something like seizures, chest

pains, inability to use my hands, arms, legs feet normally. Right now

even my facial muscles aren't right. Yeah, numbing, pain.

Anyway, I just wanted to share. I don't know why I feel so insecure

about being here. Maybe it's just natural.

Thanks for listening, prism

[Guest guest]

Hello Everyone,

I was going to respond earlier today but I was interrupted by a stupid episode

I had. I fell out of our shower today. . face first. . .I'm okay. . I jolted my

upper body. . scraped my knee and bit my lip and I'm sore but other than that .

.. I'm fine. Put me to bed and changed my plans for the day but other than that.

.. I believe I'm fine. . . what's interesting is that I have lived in this same

house for 10 years . . gone through 3 major surgeries and 2 minor surgeries and

multitude of tests and minor procedures of which one would think I would have a

risk of falling out of the shower and NOT done so. . . 10 yrs. . I fall . . .

that's after a Decompression and Detethering. . . both very risky for a fall. .

so it just goes to show you . . some days the planets are just not aligned in

your favor:)

Okay. . . so to respond to the post. . . the reason I keep myself active in

this group and some days I really want to move on from Chiari and TC but then I

think of how lonely and scared I was when I found out I had it. . that's exactly

why I have stayed this time. . . I left before . . .but that doesn't help

" newer " members. . . people like yourself who just had an MRI and come to

support groups and realize that people are still dealing with this situation

years later and think. .. .what are these people nuts my neurosurgeon said. . "

he can go in there and do this that and the other thing and I'll be fine. . . .

or my doctor said. . .Chiari. . it's nothing. . . don't worry about . . . "

Fortunately or unfortunately, Chiari and it's related disorders, have their

own set of symptoms for each person and that person has to seek out the best

doctor for themselves w/the help of support people (family members, friends,

support groups, medical people,etc.) and yes, make their own decision. . . I

have a friend right now who has what they would term " Chiari 0 " who is not

having surgery and whose doctors in my same town tell him that it's not causing

his symptoms although he and I know full well that it is. . .and he isn't crazy.

..

Chiari doesn't have to make you a negative person. . . but it is very draining

emotionally and can take years to be correctly diagnosed AND it can be the

symptoms you had prior to surgery or some that develop after for whatever reason

that don't necessarily always go away completely. You can have related

disorders such as Tethered Cord like myself . . . which I had surgery for and

I'm doing much better. March 2006 - I couldn't get out of bed for more than 4

hours a day. . . Today (when I'm not taking a dive out of the shower) I'm out of

bed and working full-time and running the household and talking to people

on-line, going on trips with my family, shopping at Wal-Mart, etc. Surgery can

make you better. I believe as I have understood it and I'm sure someone will

correct me if I'm wrong drs try and stop the progressive nature of the disorder

in terms of damage to nerves, etc.

One thing I would say, surgery is not to be thought of as a cure for Chiari.

Having said that with physical therapy and naturapathic therapy, I feel 95%

better.

Okay, I'm going to take my sore body to bed and try to rest. It should have

been a good sign this week when a friend's 20 month old daughter tripped in the

bath tub and split her lip - I should have known this was coming. . . What a

day. . .

Take care guys,

Wyoming

Decompressed May 2002

Detethered April 2006

---------------------------------

Get your own web address.

Have a HUGE year through Yahoo! Small Business.

[Guest guest]

, Prism, and all,

I can echo all of what everyone is saying. I stay on this board for the support

because I have ongoing problems (2 failed decompressions and a failed

pseudomeningocele repair, EDS, TC, POTS, and every other acronym you can think

of - and some I make up just for the fun of it!), but also because I know I can

help some newbies out there. But it is hard to give advice too, because while a

heart palpitation for me is because of brain stem compression, it could mean

something completely different for you!

It's a conundrum, because we all know how hard it is to find and keep a good

doctor, but at the same time we can't self-diagnose because it's just too

dangerous. So, like Sally so wisely said, you do have to keep that in mind when

you get advice. Only the doctors that post are actually the doctors here! But

we are all trying to help, and in my honest opinion we do a rockin' job of it.

Without this group I'm sure I'd be legally insane by now.

Would I re-do my decompressions? Honestly, no, not by the doctors who did them.

If I had it to do over again, I'd claw my way to TCI and get de-tethered first.

But no one knew that three years ago, and I can't undo what's already been done.

So now I am where I am, and I have to deal with that. No one can answer that

question for you, but I can say this. Get all of your facts together now, and

don't take your doctors' word for anything he can't back up. I was so excited

that I finally had a doctor who believed me, I was ready to hand him the first

sharp thing in his office (I think it was a paper clip) and tell him to hack at

it. Do your research first, and unless you're at TCI, you might be surprised.

You may end up knowing more than your doctor does, and then you know it's time

to keep looking. You can go sideways - you can't go back. That's my advice,

for what it's worth.

in Baltimore

________________________________________________________________________________\

____

Be a better Globetrotter. Get better travel answers from someone who knows.

Yahoo! Answers - Check it out.

http://answers.yahoo.com/dir/?link=list & sid=396545469

[Guest guest]

I'm going to agree with 110% on this one! If I had it to do

over, I would have found a way to get to TCI the first time.

Blessings

> Would I re-do my decompressions? Honestly, no, not by the doctors

who did them. If I had it to do over again, I'd claw my way to TCI

and get de-tethered first. But no one knew that three years ago, and

I can't undo what's already been done. So now I am where I am, and I

have to deal with that. No one can answer that question for you, but

I can say this. Get all of your facts together now, and don't take

your doctors' word for anything he can't back up. I was so excited

that I finally had a doctor who believed me, I was ready to hand him

the first sharp thing in his office (I think it was a paper clip) and

tell him to hack at it. Do your research first, and unless you're at

TCI, you might be surprised. You may end up knowing more than your

doctor does, and then you know it's time to keep looking. You can go

sideways - you can't go back. That's my advice, for what it's worth.

>

> in Baltimore

>